0 club until 7/2014. Fast forward to 5/2022- no further treatments, psa 57, 5 involved inquinal lymph nodes swollen, mass extending to hip with bone metastases. Leg lymphedema, painful groin and hip causing severe limp.
5/2022 start Orgovyx/Regulolix HT and Chemo. SEs include hair loss, neuropathy in feet and ankles, Tetnany in both hands periodically, 20lb weight gain, muscle loss, metal taste, constant unrelenting hunger, high cholesterol, low white blood cells, scary kidney numbers and hot flashes. Sweating, Sweating, Sweating!
Honestly, the side effects have been tolerable and I feel lucky. But...
Onco and I know I'm considered incurable unless something new is discovered.
Today!- lymphedema is gone and no more pain anywhere. Feel pretty good with last psa .012. 4/6 infusions done. Why should I finish the last 2?
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PSA isn't your cancer, although that is an excellent response to chemo. Your cancer exists in your body even when it is not putting PSA out. Chemo kills off many of those remaining cancer cells setting back the cancer's progression. But you have to weigh that against the side effects. Have you tried icing hands and feet during infusions to prevent further neuropathy? Some say that sucking on ice chips helps with the metallic taste.
My opinion is, if you have these excellent results you could stop now to avoid side effects. Tell your MO that you want to observe now and restart with four cycles of Docetaxel when the PCa progresses again. Continue with ADT + Zytiga, Xtandi or Erleada now.
I was going for complete annihilation of the cancer that dies from chemo when I had my 6 infusions.Knowing complete annihilation won't occur but that's what we are going for.
Thank you all. TA, I have been wearing ice footys and gloves, while sucking on frozen fruit 30 min. before and during the infusions. I continue to suck on the fruit for the 30 min. drive home and ice my feet an additional 30 min. Frozen fruit has become my favorite snack!GP24, I'm with you. I see no reason to over treat at this point. Why do you suggest adding another adt to the ht? Thank you.
Campsoups. I'm gonna check your bio now. How did that work out for you? Thanks.
Keep in mind you and I had different initial diagnosis and treatment.I was fully metastasized at my diagnosis. Systemic treatment a must.
Basic hormone treatment (Lupron, Eligard) and 6 infusions chemo as first treatment. My scans showed improvement and my PSA stayed at about 8 for 11 months. Then a rise of PSA to 40.
I then started Zytiga and it looks like now after about a year of Zytiga keeping the brakes on it I am progressing so will be looking at change in treatment.
I am also on Zometa ( bone bisphosphonate drug ) due in part to bone metastasis from skull to shins at the time of my diagnosis 2 1/2 years ago.
In my case I would have preferred to be given the Zytiga with the chemo 2 1/2 years ago but who knows what difference it would have made overall. The Peace-1 trial showed better results adding it to chemo for those like me with high volume of PC at the time of diagnosis.
So as it is the 6 rounds of chemo held down my PC for 11 months. And of course in my case Lupron/Eligard alone will not hold down my cancer progression.
You had RP in 2011, recurrence in 2014 and had no further treatment for 8 years while PSA rising to 57 and developing painful symptoms? Interesting. I might be asking the same question. Do you plan to continue Orgovyx after the chemo?
Campsoups, yes I briefed your bio and what a fight you have endured. I think you're on the right track .London441, yes at this point. I am thinking at least for the rest of 2022. But I am fluid about my treatment and will research Intermittent HT and even BAT.
I had 6 rounds back in 2015 per CHAARTED after having my prostate radiated. I was dx in 2014 with G9, mets throughout my skeleton and nodes. Was in the zero club until about a year ago when a small amount PSA started showing up. Latest reading was 0.092.Chemo sucks, and the last couple of rounds were the worst for me but you’ve gotten this far why not finish the job? I’d hate to look back and regret not completing the full regimen.
Onco and I know I'm considered incurable unless something new is discovered."
I understand what your saying. I am trying to maintain QOL. I am already experiencing neuropathy in my feet and ankles causing problems. I don't want that to worsen and/or become permanent. Thanks for your response.
I finished the 6 doses to make the ensuing radiation more effective. The EXTEND trial at MD Anderson is assessing the possible curative of treatments in de novo oligometastatic prostate cancer. I'm not that optimistic, but I pushed it as hard as I could in the beginning when I was young enough to handle it well.
Onco and I know I'm considered incurable unless something new is discovered."
I agree with your treatment for primary diagnosis. I am recurrent and have accepted that I am incurable until something new has been discovered, so QOL is my focus while waiting. You got to work on being optimistic, it isn't over yet! Thank you for your response.
"Today!- lymphedema is gone and no more pain anywhere. Feel pretty good with last psa .012. 4/6 infusions done. Why should I finish the last 2?"
This is kinda off the context of your question,. Did you do anything special to get the lymphedema and such to go away or did they all go away on there own?
I did not have any pain during chemo. I did start with lymphedema before I was finished with 6 infusions. Still have some and a little bit of neuropathy. Finished chemo in Dec 2021.
My lymphedema was due to enlarged lymph nodes and lack of treatment. It started 6 months before I sought treatment and got so bad, I was gonna have to buy a cane. 6 weeks after starting HT and chemo, it dissapeared! Now I have neuropathy that seems to be progressing, and am afraid to let that continue or become permanent. I need my feet to function.
thank you for your response. None of it is an easy road at times.
Kill the little bastards. Don’t give them a chance to colonize and multiple. You night research micro-metastasis and discuss with your oncologists.
Personal note. In 2004, I never used ice except to suck on a chip once. I was 57 and participated in a chemotherapy with hormone therapy trial for a six month duration. Essentially had nine alternating infusions of Adriamycin and nine infusions of Taxotere; plus some orals.
I suspect, but don’t really know that ice inhibits the flow of blood where the little bastards hide. I am not advising against using ice; however the topic is worthy of discussion on micro-metastasis and known systemic inhibitors. I could be all wet, but I think at least a discussion is prudent.
Finish your chemotherapeutic sessions..,.,. Best of luck.
I suspect, but don’t really know that ice inhibits the flow of blood where the little bastards hide.
Same with me but I guess its a personal choice from what I see from guys on the forum here.
Bone mets from skull to shins scared the crap out of me. I unscientifically said no to any ice. I wanted that poison in every crook and cranny of my body lol.
I have researched micro mets and understand what your saying. Currently, being incurable means they can't get em all. I've accepted that. So QOL is my primary goal with hope that something new will be discovered to save us. I also pondered ice for the same reason as you, in to addition of drinking lots of water to flush the chemo faster. I did ice, but not the water. Thanks for your input.
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